Author
Topic: Questions about children's health (Read 17291 times)

I apologize in advance for posting about my children so much, but one of the reasons I joined this forum was to be able to deal with certain situations better, and most of them revolve around my children.

Background: I have three children. Two of them have a genetic bone disease called Multiple Hereditary Exostoses (well, it has several names, this is the one I use most often). The disease is caused by a dominant gene, so any children of an affected parent have a 50% chance of inheriting it. My children get it from my ex-husband. This disease ranges in severity from a minor annoyance to extremely severe. My oldest has a moderate case and my youngest has a more severe case, but not as bad as it could be. We spend lots of time at doctors offices and in hospitals, and can frequently be in for surgery. My youngest was also born 16 weeks early and has additional health issues beyond the complications of MHE. For additional background for anybody who's interested, here's a link to a reasonable explanation of the condition: http://ghr.nlm.nih.gov/condition/hereditary-multiple-exostoses though the line about "not present at birth isn't entirely correct.

So, the problem I run into is when people ask me why I had kids with my ex-husband knowing that they could be "sick". I love my children dearly and wouldn't trade them for anything. I shouldn't have to explain myself. In truth, I did not realize that the condition could be so severe. My ex-husband and his mother both had reasonably mild cases, with just minor disruptions to their lives. The literature that was out there 15 years ago when I got married wasn't nearly as robust as it is today. It's a fairly rare condition, and therefore doesn't get much attention. If I had known how severe it could be, I might have made a different choice, but I made the choice I did and I have three wonderful children as a result. I can't imagine my life without them.

I get these sorts of questions from nearly everybody; near strangers to family members. I generally respond somewhat like I said above, but some people just keep pressing, and other people I just don't know well enough to be comfortable explaining all that. I'd appreciate any advise you guys have.

Thanks.

Logged

Some people lift weights. I lift measures. It's a far more esoteric workout. - (Quoted from a personal friend)

"Why does anybody have kids knowing they could be sick? I have never met a parent on the face of this earth who got an iron clad guarantee ahead of time that their child would be born healthy and stay that way."

Oh, I *like* this one, but I'm afraid I couldn't say it without so much snark that I'd come across as the world's biggest witch.

For strangers, I think I'll stick with "that's a personal question", but for family members, I'll need to dig a little deeper. My sisters and their husbands are wonderful, and my parents, on this issue, are fine, but extended family members can be less than nice about everything.

Logged

Some people lift weights. I lift measures. It's a far more esoteric workout. - (Quoted from a personal friend)

I get these sorts of questions from nearly everybody; near strangers to family members.

This makes me wonder why folks even know that what your kids have is hereditary.

I think you might be a little like me and we both need to stop giving out information that even leads to further questions. I suspect that you are just answering questions, and then folks feel free to ask more and more.

Somehow, after the first question is asked and answered, you need to indicate that the discussion is closed.

For example:

Stranger: "What ailment do your children have?"You: "a bone disease" <- and I'd leave out "genetic" and "Hereditary" and anything else that causes them to ask further.

Stranger: "Oh, is it genetic?"You: "Actually, unfortunately, it's a subject that comes up often and I'm rather sick of talking about it and focusing on it. It's commonly called MHE. You can find more info about it on the Internet. How about that beandip?"

Questions like those don't deserve an answer. I'd give them a chilly stare and walk away.

I'm with Roe. A question so personal and so intensely rude deserves no other answer.

If giving a chilly stare doesn't come easily (it doesn't, for me), then I'd go with a raised eyebrow and, "Pardon?" This gives them the chance to retract the thoughtless question and, perhaps, even mumble an apology. If instead they persist in asking, then the chilly stare becomes much easier.

Oh, I *like* this one, but I'm afraid I couldn't say it without so much snark that I'd come across as the world's biggest witch.

For strangers, I think I'll stick with "that's a personal question", but for family members, I'll need to dig a little deeper. My sisters and their husbands are wonderful, and my parents, on this issue, are fine, but extended family members can be less than nice about everything.

I get these sorts of questions from nearly everybody; near strangers to family members.

This makes me wonder why folks even know that what your kids have is hereditary.

I think you might be a little like me and we both need to stop giving out information that even leads to further questions. I suspect that you are just answering questions, and then folks feel free to ask more and more.

Somehow, after the first question is asked and answered, you need to indicate that the discussion is closed.

For example:

Stranger: "What ailment do your children have?"You: "a bone disease" <- and I'd leave out "genetic" and "Hereditary" and anything else that causes them to ask further.

Stranger: "Oh, is it genetic?"You: "Actually, unfortunately, it's a subject that comes up often and I'm rather sick of talking about it and focusing on it. It's commonly called MHE. You can find more info about it on the Internet. How about that beandip?"

Let me clarify the "near strangers" comment. These would be people I either know peripherally, like friends of friends, or other parents I've met through the various medical appointments. For the latter group, you're right. I need to drop off the "genetic" part of it.

I'm pretty good at staving off questions from actual strangers. Unfortunately, some of the "bumps" the boys have are rather obvious, and comments have been made by total strangers while we've been out and about. My responses might not be ehell approved, but I generally reply "do I know you?" when asked "what's wrong" with my child by a total stranger.

Logged

Some people lift weights. I lift measures. It's a far more esoteric workout. - (Quoted from a personal friend)

I get these sorts of questions from nearly everybody; near strangers to family members.

This makes me wonder why folks even know that what your kids have is hereditary.

I think you might be a little like me and we both need to stop giving out information that even leads to further questions. I suspect that you are just answering questions, and then folks feel free to ask more and more.

Somehow, after the first question is asked and answered, you need to indicate that the discussion is closed.

For example:

Stranger: "What ailment do your children have?"You: "a bone disease" <- and I'd leave out "genetic" and "Hereditary" and anything else that causes them to ask further.

Stranger: "Oh, is it genetic?"You: "Actually, unfortunately, it's a subject that comes up often and I'm rather sick of talking about it and focusing on it. It's commonly called MHE. You can find more info about it on the Internet. How about that beandip?"

Let me clarify the "near strangers" comment. These would be people I either know peripherally, like friends of friends, or other parents I've met through the various medical appointments. For the latter group, you're right. I need to drop off the "genetic" part of it.

I'm pretty good at staving off questions from actual strangers. Unfortunately, some of the "bumps" the boys have are rather obvious, and comments have been made by total strangers while we've been out and about. My responses might not be ehell approved, but I generally reply "do I know you?" when asked "what's wrong" with my child by a total stranger.